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6 months ago

Interesting comments .. some had no progression while on staying without DMTs while some have been doing fine with them.

Personally I tried no dmt route for about a year and half … had a couple of relapses. My Neuro advised me ok ‘enough of experimentation, time to get started on a DMT’. So got started on Gilenya and had no relapses since. I guess if you could handle it without a DMT with no evidence of progression (clinical and MRI), then I guess one could give no DMTs a shot. Otherwise you’re running risk of accumulating damages.

6 months ago

I don’t know, @dominics. So I’ve been on Tecfidera for 2 years. No new lesions and no problems with the medication at all. But because slowly, slowly, there is deterioration with walking, with strength, with limitations, who will ever be able to tell me that I’m better with, or would have been better off without, DMDs? I mean, before being diagnosed 2 years ago, there are no MRIs to track how rapid the MS has been progressing.

My hook, is that I place my trust in the professionals and in the statistics. But equally, I have every respect for people who decline DMDs. Thanks for posting the article, it’s great that there is so much credible stuff out there to help people make informed choices 🙂 PS, how’s the Ocrevus going?

6 months ago

@vixen Like I you I trust the data. The Prof Giovannini stuff – it isn’t just one guy’s ideas, he is the good front man tho – is incredibly compelling and understandable. I urge anyone to watch all the videos from ECTRIMS 2018, done by the amazing MS Reporters team from Shift. They are all on the website.

The entire brain health stuff and how MS – any form or degree – affects it is something that fills me with dread.

The idea that MS progress can be tracked with MRI alone is also pretty outdated. it is not a 100% reliable indicator of progression. Some people exhibit a lot of plaque activity – lesions – whilst not having corresponding outward physical symptoms and vice-versa. Ask any neuro why that is and I guarantee they won’t know. Some people have very few plaques but significant physical disability.

I know it is a comfortably reassuring thought that there is a linear relationship between plaques and progression and therefore new/more plaques is a bad thing and no new laques that can be seen on MRI means that nothing is happening. I have had lengthy discussions with experts and this simply isn’t the case.

I feel like I am going on and on about the latest therapies – it is only because that is where the science is leading us. There is no such thing as benign MS.

The issue is about risk/reward. I do so wish people could understand the risks and be able to factually weigh the incidence of risk against the likelihood of benefit. I know it will happen but it pains me to think someone has to experience any sort of obvious physical or mental deterioration before they even consider whether the risks outweigh the rewards. Knowing they waited when there was the opportunity to negate or mitigate the effects of MS would surely be very hard to deal with. I want to look at my daughter and tell her that I have done everything I possibly can to stay as well as I can for as long as I can.

Perhaps it is having it for so long. I feel like I have to do all I can to stay on top/ahead of this as it is unlikely that there will be a cure in my lifetime. The best case scenario is a regularisation of HCST, it will be the final shot for me and many. Fingers crossed.

As for my Ocrelizumab, the main difference now id the blessed freedom from pills. I am titrating off the Duloxetine now and am going to start titrating the dose of Modafinil down as well. I did a little dance when I uninstalled the medication reminder app from my phone! I haven’t had any more flushing and nor have I had any of what the neuro delicately referred to as ‘faecal urgency’! All in all it is the things I am not worrying about now that are the good things. I haven’t had any reaction, i do imagine I will be more susceptible to colds, and I trust the study data regarding it doing its thing to affect my MS.

6 months ago

The suggestion that doctors should “push” DMTs is, to me, paternalistic and does not reflect respect for the patients. We all have different beliefs, values, priorities, and fears. The patient is the one who has to live with the decision, not the doctor. I’d also like to point out that it’s an American article. Which means that money, paid leave, and whether it’s on your insurance company’s formulary also play a huge role in DMT decisions. Not everyone is interested in the logical, scientific answer, and not everyone shares your faith in pharmaceutical companies. I can relate to not wanting a constant reminder that you’re ill – I personally did not want to take a daily pill for that reason. Stress management and a positive psychological outlook aren’t trivial matters and should be taken seriously. Also, some people would rather believe it’s in God’s plan – that is actually a fairly common issue that comes up in the US in terms of parents making medical decisions for their children as well as for themselves. I personally chose to try a DMT but if a doctor ever disrespected me for my decision I wouldn’t go back. Then what good has been accomplished? I think doctors should provide options and information, even recommendations if asked, but should not “push” their patients. Doctors should show respect for their patients.

6 months ago

@mamawals – I am puzzled by the idea that doctors ‘push’ DMDs. The hippocratic oath means that a doctor is obliged to put the patient’s best interests first. I have never met a medic that wouldn’t try to offer the most efficacious therapy – as determined by scientific research – to a patient.

I think you are bang-on with your observations about recommendations. I had a very polite argument with a neuro as I believe that the doctor should lay out the choices but also say, ‘Given your circumstances, I suggest X as the best option.’ He wanted to just leave it at two or three options and allow the patient to take it from there. he is the expert and ought to give guidance as well as just the menu.

I have faith in research using the scientific method. It happens that pharma companies – through a capitalist model – provide vast sums of money for research. They are just big companies in other respects. Thankfully they are highly regulated as previous behaviour was atrocious – think Thalidomide. A really informative site is Ben Goldacre’s Alltrials one This is a worthwhile campaign to keep the companies in check.

Respecting a patient’s choice to act contrary to their advice is also something they have to do. As is the right to seek a second opinion – something I think everyone ought to do. DMTs are a serious choice, I want to hear it face to face from at least 2 experts. It is also their responsibility to use their expertise and knowledge to also explain why they say what they do, and why a belief raised may not be correct. If you had the wrong end of the stick on something I hope you’d feel that the expert explaining it was not being paternalistic but trying to ensure that an incorrect belief did not prevent you from taking their advice.

Whether the article is from the US or not isn’t the point. The person is discussing what underpins their choice. In the UK we are fortunate not to be constrained by financial issues that occur in the US. The comments are illuminating regarding strongly held attitudes.

6 months ago

6 months ago

Commission? I wish.

You give interesting references in so far as they really highlight the diverb=gence between the US and UK systems. In the UK there is a growing level – still not sufficient – of pressure on the pharmaceutical companies as the level of state involvement is nearly total in the healthcare system. For example:

The first article you give is nearly two years old and it – somewhat tangentially – illustrates how terrible the mainstream media are at science. No doubt that the Roche/Genetech PR machines went into overdrive when the product was launched and the non-scientific publications just bit at the press release.

the sad thing about the Propublica Dollars to Docs site is there is no context with regards to how those dollars are influencing their clinical practice. Seeing a doctors prescribing habits before and after the money would be much more illuminating.

However, relying on single source opinions (Dr. Annette M. Langer-Gould) is very problematic as far as basing one’s opinions on it. This serves to highlight the difference between facts and truth/opinion –

Another big thing not touched upon in behavioural/cognitive biases. We all have them and the best we can be hopeful of is understanding our own. To a large extent it is how we are programmed at an evolutionary level. Some light reading here 🙂



6 months ago

I’m in complete agreement with what you’ve stated, well done !
Couldn’t have put it better myself

6 months ago

@dominics I was just chatting to someone at MS-UK who said other centres in the UK were gearing up to offer HSCT…

After this bout of Optic Neuritis, I wouldn’t dare not take one of the DMD’s. I’m hoping I can take something and never have any issues again to be honest. This was my first issue and it’s scared the crap out of me.

6 months ago

@mtvesuvio I agree, it is scary. I was lecturing in Tel-Aviv some 12 years ago when, mid-sentence, I lost the ability to talk. The brain just stopped. A most extraordinary feeling. I turned to the whiteboard and started drawing the most complicated diagram I could think of to buy time. Then after about 30 seconds normal service was resumed. I was self-employed and the panic that went through my head about not being able to earn by working was awful. It went on like this for a month or so and hasn’t happened again. Part of the delights of MS.

I made it clear to my nurse that I was seriously considering go abroad and paying to have Stem-Cell (HCST). The ocreluzimab convinced me otherwise – a slight over-simplification there 😉

Presently, in the UK, my condition would have to be so much more serious than it is to get it here. A good friend is having it done privately in the UK as I write. He is very fortunate to have a generous employer who is picking up the tab. He is a similar age to me and it is only newly diagnosed and a very odd-sub variety. He is petrified about losing his marbles as his brain is his job (He writes and lectures).

I don’t want to wait until I am a state before I get treatment. I keep enough for a one-way ticket to Switzerland in case something ghastly and unforeseen happens and leaves me in a rotten way.

6 months ago

Everyone’s MS is different, I had two aunts that had MS before there was any treatment. One aunt had it so severely she was in assisted living by the time she was 28. She died at the age of 50 from brain shrinkage, that scared the crap out of me. My other aunt lived to be 75 and mostly had trouble walking because of foot drop. She died of cancer not MS. When I was diagnosed the first thing I asked was what kind of treatment of available. I could put up with any kind of misery that the DMT doled out to slow down any brain shrinkage. I have had only one relapse in 11 years and my neuro said it was a mild one. Potter

6 months ago

@dominics I’m with you. I’ve told my partner if I end up awful, please take me to Switzerland!

It’s ridiculous that you have to be in a state before you can have the HSCT. I hope that it becomes more available to people so they can have the best armoury at stopping MS in its tracks. I know it’s risky, but it’s my decision.

@potter that’s the worse thing – not knowing how it’s going to turn out. I’ll do everything in my power to try and stay well.

6 months ago

Re: Switzerland

I have talked this possibility – as highly unlikely as it is – with my wife, daughter and parents. My line in the sand is known to them. Everyone understands.

In the meantime, I am going to nail this with the best available. I am very happy that I have been formally trained in data interpretation. Properly understanding risk at a meta level as well as at an individual level makes it so much easier to have discussions about relative risks with relation to drugs, and that is a liberating feeling.

We are so habituated to some risky activities in our daily live that when something we are unaccustomed to pops up it seems terrifying, even though, in the correct context it is hugely mitigated. As ever, it is a trade off. One that – in my case – is well worth the risks.

If a Data Sheet for driving was produced in the same manner and with the same requirements as a drug data sheet, and then shown to a prospective first-time car passenger they’d run screaming from the room and wouldn’t go near a car ever again!

6 months ago

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